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Saturday, July 27, 2013

Jane Strauss is not an actress, a school board member, or the dead
author of the Blue Book of Grammar and and Punctuation. She is an
Autistic mother of five ( 4 with "autistic like behaviors in the 80s, and 1 with a current ASD label), partner of another autistic, digital photographer, attorney in
remission, advocate, and writer. In her spare time she maintains a
household and tries to pay the bills, while filling in entirely too much
paperwork.Only a little snide. You could add that she resides in Minneapolis, MN and does not stay there to enjoy its weather.

I'm autistic. I'm
a parent of 5 kids, all spectrumish, from 15 to 30. All but one are
successful, quirky, and on their own. I still feel like I am about 18 -
going
on 60.

I am
told how high functioning I am. I am the linchpin holding our small
family (mom, dad, and 15 year old,
all formally inhabiting
the spectrum) together, because my Autistic Superpowers are paperwork,
tracking calendars, and photography. I am the Dreaded Aspie With A
Mortgage. And I
am like your kid.....in spite of my being the one to fill in the
endless paper work for state services or read the pounds of IEP stuff.

I
try to multitask. Some days I can accomplish as many as fifteen
things. But the little things fall off the radar. Like combing hair.
Like brushing teeth. Like remembering to eat meals. Like remembering
the clothing is in the washer and needs to be put in the dryer . Like
putting the dishes away before they are piled high enough in the drainer
to fall out. Out of sight, out of mind. I get the budget juggled and
the bills paid, and get projects for my fledgling photography business
completed in a relatively timely manner, and get my family fed at least
breakfast and dinner, most days.

Cleaning and
organizing terrify me. And they are things that I constantly have to
keep on top of, and push myself to do as a result. The visual clutter as
I try to do this can bring on a meltdown, or , at the least, the
shakes. I'm told that I am pretty good at developing systems to
organize, but I always lose things at the most inopportune moment.
Perhaps if you are a parent of a spectrum kid you have wondered about
why their room is such a mess. It could be, because the clutter makes
it difficult to focus so they get distracted in the middle of the
cleaning. It could be,
because many, many typical kids also keep their rooms in disarray.
It could be, because, like me, they put off cleaning until the mere
thought becomes overwhelming.

Big stores are not among my
favorite places to be. However, in 37 years living in one place I have
finally learned to navigate in them, at least if they are local, and
familiar. When I first moved to Minnesota, in 1976, and had never
before seen a Target store, I quickly learned to budget at least 3
hours for a trip there. Visual clutter, again, is the villain. I would
think I knew where things were, and might be able to find them, if I
had a printed list. The list would keep me on track, but as soon as
something had been moved, or was out of stock, I was sunk. Lost,
dismayed, distressed, panicked - Sometimes I spent half an hour in a
corner or in the restroom, just shaking. And this was *before* I got
the
Autism label, when I had no understanding of why I was so confused.

Nowadays, things are much better. Through practice I can sometimes get out of the store in 30 minutes, or even 15. At
9 years old, I lost my hairbrush the first day of Girl Scout camp and
when I got home my curly hair had to be cut off because the tangles are
so fierce. Now I have a set place to keep the brush, so it does not get
lost. 30 years ago, when my schedule changed for summer I'd lose 20
pounds because I did not feel hungry and forgot to eat. Now I schedule
in at least two meals in a day and maintain a steady weight unless too
many stressors pile up. I am like your child, but have had 50 years to
figure out workarounds
and learn how to shove my way through through stuff I fear, because
nobody else will.

Wednesday, July 24, 2013

by ChavisoryWhen I was a kid, I got told a lot that I was never going to make it in the real world. Only that isn’t what the people who told me that thought they were saying, when they said things like this:

“You’re going to have to learn to work with other people.”

“You have to be able to work with people different from you. You have to understand that not everyone is like you.” Nobody at all was like me. I knew that.

“If you don’t learn to work with other people, you’ll never make it in the real world.”

“Employers all say that the biggest reason they fire people is not inability to do the job, but inability to get along with others.” So I was basically, completely screwed.

(The future well-being or success of others was never predicated on their ability to work with people like me.)

I can’t even count the iterations of this message I heard over the years, from how many teachers and authority figures, people the school brought in to tell us how it was in the “real world.” It was endless. That everything I did had to be the best. And none of it would ever be allowed to matter. It would never mean anything.

They didn’t mean to tell me that I had no future and no chances. But they did. I guess the thinking was that I could be intimidated into understanding how mandatory it was that I learn to work with other people, and that, since I was basically an obedient child who wanted to do well, I would.

Only I couldn’t. I couldn’t even begin to do what that would entail.

It’s corrosive and fraying to hear constantly how much you don’t matter because your needs—which aren’t real; you’re imagining them, or being spoiled and entitled—make you inferior and incapable. That your differences and difficulties will make other people—real people, people who matter, people with power over your life or work—look down on you, and therefore you won’t be allowed to succeed, no matter what.

Unless you can make yourself acceptable.

But you can’t, so forget it.

These days, I’m lectured a lot about some other child, who it’s been decided “will never.” Who “will never” live on her own, advocate for herself, have a job, write a blog or be able to understand a debate, be in a relationship, defend her self-worth, and would never say she values her autism, or think she’s okay the way she is, because she has real deficits. Other autistic children who will never do things have real deficits, and can’t function in society. Once again, I’m told that I can’t understand that other people aren’t like me.

I wasn’t allowed to have real deficits; it was just that everything I did was somehow wrong. As good as I could be was never going to be good enough. If I were ever going to get to have my own life, it would have to be one that I could make for myself, completely alone.

So I was going to go away and leave society behind. I didn’t belong in the world of people. I couldn’t learn to work with other people, and I wasn’t going to make it in society. Everyone said so. I probably couldn’t ever be valued or loved, but I’d be damned if I was going to spend the rest of my life being belittled the same way I was in school or at home for some part of every single day, because I couldn’t learn to work with other people.

I would go away, and live alone, and work alone.

That is what I planned for. It made me incredibly sad, but I couldn’t see an alternative. I studied biology. I would have a cabin in the woods, or follow wolves or prairie dogs through the fields. Maybe write books. I would have to be as alone as I possibly could, obviously, but at least maybe I could be free. I couldn’t function in society, but I would have control over my own life if it killed me.

******

Yes, things went all kinds of wrong with that plan.

In my junior year of high school, I got involved in the props crew for the school play, and senior year I took an acting class. The reasons why are part of a whole other tangent of a story, which also involves a lot of people telling me why I couldn’t do things that I thought I could. But I took an acting class, and I fell in love. I knew I had to do this for the rest of my life. I started planning on being a performer. Or a theater technician, I wasn’t sure.

I double-majored in drama and biology in college. Because the “go away and live in the woods” plan was technically still in effect. I studied biology, and I studied theater, and I tried not to think about the fact that the two plans were mutually exclusive. I couldn’t honestly have told you which was the backup plan, and which was the real one.

I was getting a mercy D in Organic Chemistry.

Then something else happened one day in class. We had the cast and crew of a local professional production in to talk to us about their jobs, and how they’d made careers in theater. Our professor asked one cast member to tell us a little about his experience in stage management.

I’d never heard the term before. It was a warm afternoon in spring and my mind was wandering.

“Well,” he said, “It basically involves keeping track of everything that no one else wants to.”

I snapped awake. I didn’t know how to believe what I’d just heard. That was what I did. That was what I was. That was a job?! That was a real job, that someone could have?

Then that was what I would do.

Do you want to know something ironic?

I get told now that I’m a good communicator. It still stuns me a little, every time. Being valued the way I was—neurotic, detail-oriented, enforcing routines and making lists—took me a while to get used to.

I’m good at working with people. I even work better with other people than I do alone. But most of what changed was context, and what was valued within that context.

In biology, it’s called a niche. The place in the world where you fit. The singular role in the ecosystem that you’re adapted to fulfill.

I grew up being told that I did not and could not have one. This is only part of the reason why I’m automatically skeptical when I hear absolutist proclamations of what a child will supposedly never do. Because context matters. Because how the people around you choose to see you has real effects on how you function. Because I got told a lot about what I would never do, too. And yes, I worked really hard at skills that other people take for granted, and pursuing opportunities, and I don’t want to downplay that. But I was also given a lot of chances. The theater and arts world gave me opportunities to succeed, without prejudice, in ways that the rest of the “real world” wouldn’t allow me, and that has made all the difference in how my life has turned out.

The world is a big place, and the real world is what people make it. Never is a long time, and I truly believe that everything belongs somewhere. Give us real chances to succeed. Let what we’re good at matter.

Saturday, July 20, 2013

Ask what I think. Ask if I think it
went well or badly or so-so. Ask if I have anything I want to say
about it. But do not ask me to tell you how I feel
about something, and never ask for one feeling word to sum
anything up. Just don't do it. If I try, I'm going to wind up melting
down (probably at you, that's what I call it when a person actually
does become the target of the screaming from a meltdown, which
doesn't happen much.) I'm also not going to come up with a word.
Remember
how I talked about having a different set of abilities when I was
talking about why I use the word DISABLED, not differently abled?
Yeah, that whole feelings thing is one of the abilities I don't
really have so well. Alexthymia: It's a thing.
This came up
because at Autism Campus Inclusion (training run by ASAN for autistic
college students who also do/want to do activism stuff, they pay for
all the things including transit to them and a food stipend) we had a
presentation about how to run meetings. That's useful. It really is.
And the idea of doing an evaluation of the meeting afterwords is
useful. It's just the "how this evaluation is run" that
needs some changes in order to be accessible to the pretty large
number of autistic people who are also alexthymic. Also alexthymic
people in general, of course.
The presenter talked about how it's
hard, but people have to "get out of their heads and into their
guts." No, we don't need to do that, because some of us
can't do that. And if you demand it at an autistic meeting,
you're making the evaluation inaccessible to some of the people in
your target audience. Bad idea.
Or "My answer is always
"frustrated," because if you're asking me to name my
emotion, I will be," as one participant said after the meeting.
Not in the actual evaluation, because EMOTIONS. HOW DO WE? A lot of
us also have delays on figuring out what emotion we are having,
assuming we ever do figure it out. So.
Access need for a whole lot
of autistic people, including me:
Don't put us on the spot to tell
you how we feel. (Probably don't put us on the spot at all,
make sure we know ahead of time what questions will be coming.) Don't
demand that we figure out what our emotions are on your time frame
(or at all, really, since it won't always be a thing.) If you want
feedback on how something went, ask questions that we can actually
answer, and take delayed feedback if that's what we need in order to
give it. Let us type it. Let us write it. It's an access need.

Ask what I think. Ask if I think it went well or badly or so-so. Ask if I have anything I want to say about it. But do not ask me to tell you how I feel about something, and never
ask for one feeling word to sum anything up. Just don't do it. If I
try, I'm going to wind up melting down (probably at you, that's what I
call it when a person actually does become the target of the screaming
from a meltdown, which doesn't happen much.) I'm also not going to come
up with a word. Remember
how I talked about having a different set of abilities when I was
talking about why I use the word DISABLED, not differently abled? Yeah, that whole feelings thing is one of the abilities I don't really have so well. Alexthymia: It's a thing.
This came up because at Autism Campus Inclusion (training run by ASAN
for autistic college students who also do/want to do activism stuff,
they pay for all the things including transit to them and a food
stipend) we had a presentation about how to run meetings. That's useful.
It really is. And the idea of doing an evaluation of the meeting
afterwords is useful. It's just the "how this evaluation is run" that
needs some changes in order to be accessible to the pretty large number
of autistic people who are also alexthymic. Also alexthymic people in
general, of course.
The presenter talked about how it's hard, but people have to "get out of their heads and into their guts." No, we don't need to do that, because some of us can't
do that. And if you demand it at an autistic meeting, you're making the
evaluation inaccessible to some of the people in your target audience.
Bad idea.
Or "My answer is always "frustrated," because if you're asking me to
name my emotion, I will be," as one participant said after the meeting.
Not in the actual evaluation, because EMOTIONS. HOW DO WE? A lot of us
also have delays on figuring out what emotion we are having, assuming we
ever do figure it out. So.
Access need for a whole lot of autistic people, including me:
Don't put us on the spot to tell you how we feel. (Probably don't
put us on the spot at all, make sure we know ahead of time what
questions will be coming.) Don't demand that we figure out what our
emotions are on your time frame (or at all, really, since it won't
always be a thing.) If you want feedback on how something went, ask
questions that we can actually answer, and take delayed feedback if
that's what we need in order to give it. Let us type it. Let us write
it. It's an access need. - See more at:
http://yesthattoo.blogspot.com/2013/06/choosing-your-questions-dont-ask-how-i.html#sthash.ZAZUGPVo.dpuf

Ask what I think. Ask if I think it went well or badly or so-so. Ask if I have anything I want to say about it. But do not ask me to tell you how I feel about something, and never
ask for one feeling word to sum anything up. Just don't do it. If I
try, I'm going to wind up melting down (probably at you, that's what I
call it when a person actually does become the target of the screaming
from a meltdown, which doesn't happen much.) I'm also not going to come
up with a word. Remember
how I talked about having a different set of abilities when I was
talking about why I use the word DISABLED, not differently abled? Yeah, that whole feelings thing is one of the abilities I don't really have so well. Alexthymia: It's a thing.
This came up because at Autism Campus Inclusion (training run by ASAN
for autistic college students who also do/want to do activism stuff,
they pay for all the things including transit to them and a food
stipend) we had a presentation about how to run meetings. That's useful.
It really is. And the idea of doing an evaluation of the meeting
afterwords is useful. It's just the "how this evaluation is run" that
needs some changes in order to be accessible to the pretty large number
of autistic people who are also alexthymic. Also alexthymic people in
general, of course.
The presenter talked about how it's hard, but people have to "get out of their heads and into their guts." No, we don't need to do that, because some of us can't
do that. And if you demand it at an autistic meeting, you're making the
evaluation inaccessible to some of the people in your target audience.
Bad idea.
Or "My answer is always "frustrated," because if you're asking me to
name my emotion, I will be," as one participant said after the meeting.
Not in the actual evaluation, because EMOTIONS. HOW DO WE? A lot of us
also have delays on figuring out what emotion we are having, assuming we
ever do figure it out. So.
Access need for a whole lot of autistic people, including me:
Don't put us on the spot to tell you how we feel. (Probably don't
put us on the spot at all, make sure we know ahead of time what
questions will be coming.) Don't demand that we figure out what our
emotions are on your time frame (or at all, really, since it won't
always be a thing.) If you want feedback on how something went, ask
questions that we can actually answer, and take delayed feedback if
that's what we need in order to give it. Let us type it. Let us write
it. It's an access need. - See more at:
http://yesthattoo.blogspot.com/2013/06/choosing-your-questions-dont-ask-how-i.html#sthash.ZAZUGPVo.dpuf

Ask what I think. Ask if I think it went well or badly or so-so. Ask if I have anything I want to say about it. But do not ask me to tell you how I feel about something, and never
ask for one feeling word to sum anything up. Just don't do it. If I
try, I'm going to wind up melting down (probably at you, that's what I
call it when a person actually does become the target of the screaming
from a meltdown, which doesn't happen much.) I'm also not going to come
up with a word. Remember
how I talked about having a different set of abilities when I was
talking about why I use the word DISABLED, not differently abled? Yeah, that whole feelings thing is one of the abilities I don't really have so well. Alexthymia: It's a thing.
This came up because at Autism Campus Inclusion (training run by ASAN
for autistic college students who also do/want to do activism stuff,
they pay for all the things including transit to them and a food
stipend) we had a presentation about how to run meetings. That's useful.
It really is. And the idea of doing an evaluation of the meeting
afterwords is useful. It's just the "how this evaluation is run" that
needs some changes in order to be accessible to the pretty large number
of autistic people who are also alexthymic. Also alexthymic people in
general, of course.
The presenter talked about how it's hard, but people have to "get out of their heads and into their guts." No, we don't need to do that, because some of us can't
do that. And if you demand it at an autistic meeting, you're making the
evaluation inaccessible to some of the people in your target audience.
Bad idea.
Or "My answer is always "frustrated," because if you're asking me to
name my emotion, I will be," as one participant said after the meeting.
Not in the actual evaluation, because EMOTIONS. HOW DO WE? A lot of us
also have delays on figuring out what emotion we are having, assuming we
ever do figure it out. So.
Access need for a whole lot of autistic people, including me:
Don't put us on the spot to tell you how we feel. (Probably don't
put us on the spot at all, make sure we know ahead of time what
questions will be coming.) Don't demand that we figure out what our
emotions are on your time frame (or at all, really, since it won't
always be a thing.) If you want feedback on how something went, ask
questions that we can actually answer, and take delayed feedback if
that's what we need in order to give it. Let us type it. Let us write
it. It's an access need. - See more at:
http://yesthattoo.blogspot.com/2013/06/choosing-your-questions-dont-ask-how-i.html#sthash.ZAZUGPVo.dpuf

Wednesday, July 17, 2013

For you, it is merely the work and the
time involved, with the loss of whatever else you might have done
with that time. If you can find the time and the starting resources
(these will come back many times over, so while they are required,
they are not truly part of the price, not one of the things that you
will spend and not see return in order to get your success,) you can
have have it.

For me?

When I succeed, there are many who will
say I have no right to claim my own neurology.

When I succeed, I will either have to
hide away the brain that got me there, accept the "no excuses!"
inspiration that will be made of it if anyone knows, or be told that
I am an exception no one with my sort of brain could hope to match.
Maybe I will get all three at once.

And if I refuse to pay?

If I'm lucky, I can keep my success
anyways, but the other costs will get steeper and steeper the more I
refuse to pay the price of disavowing my own neurology.

Hate letters?

I'm expecting it.

Being told that I can't understand what
it's really like to live in my brain because I can do things?

I've already gotten that one. I've
already had people telling me how excited they are that
Asperger's is not a thing anymore, forgetting many important details.

Like the fact that, well, it's still a
thing until May, actually. Nice try, still here.

Like the fact that I've read several of
the proposed versions, and guess what? I might not know which one
they are actually going with, but I'm still autistic under all the
ones I've seen. Changing labels from "Asperger's" to
"Autistic Spectrum Disorder" isn't ceasing to exist, last I
checked.

Like the fact that you who told me I
would no longer exist doesn't know nearly as much about autism as you
think you do, and I know far more than you realize. You think
Asperger's isn't a thing, with your justification being the (likely
mistaken) belief that you meet the criteria for it. You think that it
is simply being smart and awkward, ignoring the echolalia and the
obvious sensory issues that are sitting in front of you to make that
claim.

Like the fact that you don't
know what difficulties, what disabilities I might have, no matter how
much you want to believe you know me better than I know myself.

No.

I know what it is to live in my brain.

I know what it is to be Autistic, and I
won't be forgetting just because my label now includes the word
"Autistic." That doesn't even make sense.

Being told that I am not like their
child?

Already happens, sometimes with people
whose children are, in fact, almost exactly how I was at their
age. I am more like their child than they are.

If they manage to do that to
non-speaking Autistics, I'm sure they'll do it to me if I
won't disavow my neurology or claim exceptionhood first.

And I won't.

The only way I am truly an exception is
that my abilities were presumed and built upon instead of ignored to
work on deficits and differences. The rest, while perhaps not the
median (can we have a median on a nearly infinite-dimensional
spectrum?) or mode (does anyone know what that one would mean
either?) is not unusual, is not a shocking outlier no one can hope to
match. It's the right person in the right place at the right time,
that's all.

And part of "right person" is
the right person's brain, you know, that Autistic
brain?

Hiding my brain might be the price they
will try to make me pay, that they will try to deduct from my account
if I will not pay it on my own, but they will find me a difficult one
to push into hiding.

My brain is mine, my brain is
Autistic, and that means that I am Autistic.

Saturday, July 13, 2013

Every once in a while I have a situation where something happens and it requires a meeting or other encounter in a power imbalanced situation. It might be an emergency room, it might be a meeting because someone doesn't understand that the ADA does apply to them, whatever. I don't like to let shit slide, and I don't.

This is a problem, though, because power imbalanced situations make me profoundly anxious. And things that happen when I am anxious? I get even worse at moderating my 'tone' (seriously screw 'tone'), I get worse at understanding content-free speech-if you have ever been in an office setting ever you know what content free speech is, and I eventually lose all ability to speak coherently. What happens instead is an exciting mix of ASL, K sign, noises, and the occasional word. People don't understand that, and they see it as a reason to not treat me as a person. I can't play by their rules, so I am not a real person, you know? And text based communication is right out with these people.

So what do I do in these situations? I bring an allistic, of course! This person's job is to be my Cognitive Interpreter-that is, they (in my case, usually he) translates whatever it is I am saying or flapgrunting or what have you into somewhat palatable language for these people. And he translates "we need to come to the table and dialogue for synergy" into "they want you to go away after they tell you that you're wrong but don't tell you why". And when I ask, "did they just tell me to fuck off?" he says "why yes they did!" as the nurse is protesting that she is sincere.

A cognitive interpreter is not someone who speaks over me. One of the reasons I get flustered in such situations is because I don't have time to translate thought to English to socially acceptable English before people start talking over me. A key thing my cogint does is tell those people to shush and let me finish (or start). I am spending less energy fighting for my communicative space if someone else is doing it for me. He is also backup when it comes to the repetitive "but why are you right?" circle that happens in any adversarial conversation ever. Those meetings tend to get very gaslighty very quickly, and the backup of someone seen as a real person is grounding-it dumps a bit of water on the lamp, knowing that I am right, look, someone I actually respect agrees.

That's a lot of what it comes down to in most situations: a 'real person' is lending his support to the things I say. Sometimes he is voicing what I mean but can't make my mouth say. Sometimes he repeats absolutely verbatim exactly what I said and, like magic, they listen (which is annoying, but it happens). If I say I hurt, medical people don't believe me, but if a real person does? Suddenly they listen. He's a reminder sometimes, I think, that real people care what happens to me. One time I was in the ER with an adrenal crisis after a fairly minor accident in which I got jostled. I was very, very still and sedate-which is not like me. The doctors did not believe me that I was really not doing well at all. They listened to cogint, though, when he told them I don't sit still like that. My pulse was 40 and my blood pressure was something like 66/38. That's not conducive to staying alive-but they apparently needed a real person to tell them.

This cannot be said enough: a good cognitive interpreter does not speak over me. They do not try to make themselves the center of attention, they don't volunteer extraneous information in any situation. They do not put words in my mouth. They are almost but not quite a form of AAC and they are a drawbridge to communication with allistic society. I say drawbridge because the bridge goes up when it's not needed as a tool.

A good cognitive interpreter knows and respects the person they are helping. They know which flaps are happy and which are not so happy-I may not have standard facial expressions, but everything you could possibly need to know can be read from my hands. They know distress signals and happy and they know how to shut up when told to let me stand on my own until shit goes south again. They provide moral support in addition to communication support. Sometimes they're just called an advocate, but they're different, because they do not speak for in the traditional sense. They just make sure everyone is actually understood.

Wednesday, July 10, 2013

Grimalkin
is a mentally ill genderqueer person who lives somewhere in Texas.
Alternately Dallas. He eats bipolar II or depression or something with
nails for breakfast. He makes art out of metal and sometimes
paint and also crafty things out of yarn and tries to do both of those
things charitably. When he feels up to it, he eats mens rights
activists. And other bigots. Alive. With nails. He also is probably
autistic but is 18 and therefor probably too old to be diagnosed, oh well.

“Well if you have social issues why do you work at a Starbucks?”

This damn question. I get it all the time. Because, you
know, jobs are only for able people, especially jobs that require you
interact with people. Because disabled people all work... nowhere? I
don't know, I'm not entirely sure we exist in this mindset.

But really. Ignoring the fact that this question is
awful and flawed to begin with (Why do I have a job at Starbucks? I
don't know, because they offered me a job and I don't have the privilege
of being picky with first jobs? Because a disability doesn't destroy
your ability to do anything and everything forever?) it does raise an
interesting topic. Notably, how I navigate a job that does include a lot
of social interaction... and how it's actually not that hard to make my
job accessible, and how parts of my job go hand in hand with my
disabilities. Also how it's not that hard for my coworkers to make my
job shit by being unaccommodating dicks.

First off, I talk in scripts. I remember the right
things to say and parrot them out because I can't easily think of things
to say- or the proper things to say, anyways. You know who loves the
shit out of scripts? Starbucks. Starbucks is all good with telling you
to say the same thing to every customer every time and every customer
almost always says the same thing as every other customer in response.
There's even a set way to call out drinks to people- no need to
improvise, just read out the script. The environment is practically a
petri dish for script-using.

Because I've become comfortable with using certain
scripts in my job, I'm also in the perfect situation to learn social
skills as well. I see a huge number of people, and say the same thing to
them each time... so I can make little variations each time I have a
different customer. I can play with inflection, I can try out different
words or phrasing, I can practice more improvised communication in a way
that is very forgiving- Worst case scenario, I baffle a customer for
five minutes and then forget about them and move on to the next, where I
can try a new approach and see what works best. I can learn. It's like a
fabulous sandbox for social skills.

There are, of course, issues you run into. Issues in
this sentence being synonymous with “coworkers.” Coworkers who expect
you to act and be neurotypical, and don't have space in their tiny minds
to comprehend that you do things a certain, different way and that that
is okay. There are ways that they could be accommodating- giving orders
in ways that work with your brain (I am happy to say that I have a
supervisor who started off by asking how I take orders best), being
clear with instructions for you- seriously, fuck “be thorough. But be
fast. You're being too slow, now be more thorough! Now, let's move you
on to some other supervisor who has an entirely different idea of how to
do things.”- and being actually straightforward and serious with the
way they communicate with you. Y'know, professional.

Seriously, that last one is huge for those of us who
straight up do not easily comprehend hidden meaning and intent. An
example- as I was wiping down tables on the patio, my supervisor came up
to me and said, in a concerned tone, “What's wrong? Is something
wrong?” To which I answered no... but I became really worried because I
do have emotional issues and I can't always tell how I'm acting or how
I'm portraying my emotions. “Because... it seems like you don't want to
be wiping down tables!” At which point I'm freaking out a little inside
because what, no, I don't mind, I mean I don't love it but, just, what,
what am I doing, am I in trouble HOLY SHIT, and then all of the sudden
“No I mean, it's okay, you can be honest with me about it.” And at this
point I've kind of been brain-bludgeoned into stupefaction and am maybe
wondering if they are joking but honestly, I'm overwhelmed and just what
the fuck. Luckily they left after I hamfistedly made some response that
I don't remember but even thinking back now I am utterly baffled at
what was going on. The part of me that has kind of learned how people
work... to an extent, is thinking it might have been some kind of humor,
but jesus. Don't do that.

Along with this issue I have with coworkers, there's
the issue of... how I am. How I do things. I move weird and I hold stuff
“wrong” and I work best if I can work out my own routine of doing
things. Unfortunately, this leads to being told that... you're moving
wrong and need to hold something this way because it's better and you
need to sequence tasks this way because it's the “best” way and your own
way that makes you comfortable is WRONG.

The gist of this? Disabled people can hold jobs.
Autistic people and people with social issues can turn their jobs into
little paradises of social skills learning. The thing that makes it
impossible to keep jobs sometimes is... other people. Welcome to the
social model of disability.

Saturday, July 6, 2013

I don't think this is an uncommon problem, but I do think it's uncommon to have a name for it.

I'm significantly time agnosiac. I say agnosiac instead of agnostic because I believe time is a thing, at least for some sense of the word thing. My brain just doesn't register its passing, or lack of passing. Five minutes? Five hours? Five days? Pssht I cannot even tell without a routine, and it's still kind of iffy.

Having no internal sense of time causes two categories of problems: the "oh god oh god I am going to be late/do not have enough time to do this" problem and the "psht whatever I have all the time in the world, oh shit how is it suddenly midnight?" problem.

I have massive, terrible, horrible, awful anxiety about the possibility of being late. It's a panic attack trigger. So I have my routines, I know how long they take, but I round up an hour. Add an hour to any projected times to do things. This means? I am always early. Or almost always early. The busses don't always cooperate. But I am so worried about being late that I am instead ridiculously, obscenely early. This is awkward if showing up at someone's apartment or to meet them for dinner at the restaurant or whatever, but it's better than being late. Anything is better than being late. If I schedule an hour to get ready, an hour for each bus...then I will be on time. I can take a book or crocheting or a notebook for drafting blog posts or schoolwork on the bus and for the wait, at least I am not late.

Not helping this particular anxiety? I was always late as a child because I have too much time urgency whereas my mother figured that on time is for other people. I can't feel time and have always been profoundly aware of that deficit when it effects how a schedule is going to play out.

The other problem with time agnosia is that time just kind of runs away from me. Did I spend an hour, or ten minutes, or six hours doing a thing? Wait, why is it 1 AM? I don't know. Alarms startle me so they're not my first choice. Instead to mark time, I use music:

-I listen to Doctor Horrible's Sing Along Blog to mark chores. It has problematic elements, which I am aware of and dislike. It's the right length & the right level of engaging (not very, songs aren't too difficult to sing with while doing something else) for my purposes.

-I have several CDs or mixes that I listen to while winding down online or doing my schoolwork, so I know that however many hours have passed. If it's on repeat, I am doing it wrong-the purpose is to know when it's been 2 hours, or 90 minutes, or whatever.

-On my ipod I have several playlists that mark how long it takes to get certain places, with the added bonus of shifting my mindset a bit.

Time pieces? Are not as awesome as I thought they'd be. I tried wearing a watch and not only did they keep dying, but I'd also keep checking at what I thought were similar intervals and they...uh...weren't. That did not help the whole "anxious about time" thing. I set my alarm on my phone for one time things and set it on vibrate, and do check my phone for time if there's a reason to, but wearing it on my wrist just makes me more anxious since it seems like such a capricious arbitrary contraption.

Wednesday, July 3, 2013

Since We Are Like Your Children is about how many of us autistics have dealt with the problems that leads many NT or NT passing parents to think that Autistic activists are nothing like their children, here I will share an anecdote from my childhood.

During the time that my parents were getting divorced in third grade, I was having melt downs on a nearly daily basis.

I would scream. I would punch things. I would stomp my feet.

Oh my gosh, if they saw me, they would have given me the old "low functioning" label and called it a day.

My parents reacted to all of this with great maturity, probably better maturity than the "professionals" at my school.

They had me let it all out. As part of that, they had the wisdom to recognize that my meltdowns were not directed at them or at anyone in particular but were just an expression of some really overwhelming emotions.

As part of letting it all out, my parents gave me a safe environment to let it out. My parents told me to punch pillows or mattresses instead of things that would break.

When I needed to scream, I would also occasionally scream into pillows, also to spare my parents ears.

This gets at an important but perhaps already stated point: meltdowns are at their base expressions of emotion. These expressions of emotion aren't necessarily about blaming anyone in particular. Parents should look for better ways for meltdowns to be expressed, not look to cancel them entirely.

Routines are
import to many autistic people. How do routines help you (or an
autistic person you know well)? I am especially interested in stories
about what happens when routines are disrupted.

And now I answer.I
like my routines. I remember them pretty well, too, as long as they
are the same and they are repeating. I memorized my schedule
very quickly
in middle and high school, and every time they changed the order of
the periods on me, I was confused and often went to the wrong class.
By often, I mean almost every time. Disrupt a routine that is already
extant, and I get pretty confused. And
I form routines pretty easily. I can't let myself skip class once,
because it will become
a routine and then I'll never go. Not exactly a good routine. So I
need to be careful.But.If
I know with enough warning that disruption is coming? Or if I knew
that there wasn't going to be a routine? Or if I knew that there was
going to be a semi-permanent change in routine, like the transition
from semester to summer?I'm fine with
that. I might not choose to
do it
all that often, but give me a good enough reason and I will.Without
a reason to do otherwise, though, I'll do the same thing, day after
day or week after week. It's always the same, day after day... Same
enough that I don't need to think too much about it, anyways. That's
the point of a routine, and it lets me do ALL THE THINGS.No,
really.My senior year of high school,
my routine for Thursday was: 5:00am wake up, get ready for school,
6:15am leave house on bike, 6:25am arrive at school, 6:30am
"Independent Study" in East Asian Philosophy (there were 12
of us...) 7:30 my first "real" class starts, 1:50 school
ends, then I think it was math team, then homework, then eat dinner
on the bus to swim team, then swim, then bus back, then ride bike
back. I'd get home at around 7:30pm, eat, shower, sleep. And
I managed it.
Except that time that swim was cancelled and
I was really confused and didn't know what to do with the rest of the
day.
Oops.
Or that time last week when my Chinese teacher
thought that changing up my tutoring schedule was a good idea. Yeah,
multiple meltdowns, thankfully none in front of her because she
doesn't know I'm Autistic. I'd been meeting for the same
two hour session all semester, and then she decided that it needed to
be twice a week, not one long session. We'd been doing it as one long
session because that was the only way to make our schedules work, but
noooooo. We had to break the routine and try to find a non-existent
other time, and it's been chaotic ever since and I've melted down and
it's bad.